A soldier named Lucky, part 3: Lucky deals with post-traumatic stress and declining health

2005-2008

She wasn't the same Lucky. The war ate at her mind. Like so many soldiers she served with.

"You don't come back the same person, that's for sure," said Larry Smith, Lucky's former mess sergeant. "I'm not the same person. You change."

Lucky was irritable, quick to anger. She was anxious, depressed. She would yell at Ceylon for jumping in the house; she couldn't take loud or popping noises. And Lucky lashed out at her husband, Steve Sands, for small things.

Lucky and Steve married in September 2003, a few months before her unit was deployed to Iraq for a 14-month tour. Admittedly, it was a tough way to start a life together.

In July 2005, about five months after Lucky returned home from the war, the Sands family traveled to Sri Lanka. It was the first time Lucky had seen her parents in some time. Cynthia and Lal were struck by the change in the demeanor of their daughter. Cynthia led a group of students to China that summer and took Lucky, Steve and Ceylon. Lucky often would remain back at the hotel. She suffered wild mood swings.

Before the trip to Sri Lanka, Lucky, Steve and Ceylon visited Roshan in England. Lucky, as she so often did, kept her problems private. She did, however, share with her brother some of the more traumatic experiences she encountered in the war. She spoke of giving orders to "eliminate innocent people," women and children caught in the crossfire of firefights with insurgents.

"In that situation you don't know who the enemy is -- they could have weapons, bombs, and women could carry them, or children," Roshan said. "She said, 'If it moved, we just blasted it. We didn't wait to see who it was.'

"Sometimes it was innocent children and women. I sensed it was very difficult for her to think about, herself having a child."

Roshan privately asked Steve if everything was all right at home. He said, no, things were going badly. The marriage was falling apart.

Steve and Lucky would divorce within a few months of the trip to China.

Lucky first sought medical care at the Veteran Affairs' community-based outpatient clinic in Cape Girardeau in August 2005, according to VA officials. At that time, she was being treated for mental health issues related to post-traumatic stress disorder, said Glenn Costie, chief executive officer and director of John J. Pershing Veterans Affairs Medical Center in Poplar Bluff, Mo. The Cape Girardeau clinic is under the auspices of the Poplar Bluff center. Lucky also reported abdominal pain, itchy eyes and a rash.

Fellow soldier Chris Amacker said Lucky's post-traumatic stress disorder was off the charts. He was sure of it; he had it, too. Lucky had the "normal night terrors," Amacker said, the night sweats, the paranoia. And she started drinking, something he had not known her to do.

Lucky admitted as much in a Southeast Missourian article in April 2008.

"I'm always on the edge. I feel suspicious of people and my surroundings, and I'm always alert," she said.

By that point, Lucky was wearing wigs to cover her thinning hair, which was falling out in clumps, a condition one friend likened to mange. Her face, ears, hands and nostrils were covered with lesions. She appears to have been undergoing treatment at the Poplar Bluff VA center for systemic lupus erythematosus by that point, according to VA medical records obtained by the Southeast Missourian. But there were a number of other medical concerns and treatments reported in the medical records. At least through 2006 and 2007, doctors couldn't specifically tell her what she had. A medical progress note dated Dec. 26, 2007, reports "no definitive diagnosis."

Cynthia, who had taken extended leave from her teaching position in Sri Lanka between October 2007 and May 2008, looked after Ceylon while Lucky made repeated trips to Poplar Bluff, three hours round trip. She said Lucky came back exhausted, with no answers. She was sent to John Cochran VA Medical Center in St. Louis in early 2008, where she stayed for two weeks. Doctors told her nothing, Cynthia said.

Dr. Amy Joseph, who attended to Lucky's care at John Cochran, said Cynthia isn't correct. She said physicians were "reasonably certain" Lucky had lupus in January 2008. The medical records verify the timeline. Joseph said Lucky's lupus treatment wasn't initiated until "sometime later," however, while colleagues from several subspecialties confirmed Lucky didn't have an infection.

"The treatment of lupus is to suppress the immune system," she said. "If you have an infection, you could get much sicker, and sometimes it can be really tricky if you have both an infection and lupus.

"It took some time to sort out, but once we sorted it out we treated her appropriately for lupus."

Cynthia said VA health care professionals weren't sharing their theories with her daughter. She said Lucky traveled back and forth between Cape Girardeau, Poplar Bluff and St. Louis, coming home frustrated because none of the physicians could tell her what she had or how to stop it. In a VA mental health questionnaire completed Dec. 15, 2008, Lucky was asked this question: Are you feeling as if your future will be cut short? She answered, "extremely."

She requested and was denied outside treatment and medical procedures within the VA system, while others were delayed.

"I have informed the patient that she does indeed need to be seen by a nephrologist and I have written her a letter on a prescription pad to the VA informing them of this," wrote Dr. Gregg Hallman of Cape Girardeau Urology Association in November 2007. The VA had told Lucky it would not approve the consultation.

The soldier decided to transfer to Walter Reed Medical Center. VA officials said they helped Lucky do just that.

All the while Lucky kept a brave face to most of her family and friends, playing the part of the stoic soldier, suffering without complaint.

"When my mom started going to see her in 2007, my sister wouldn't say anything to anyone really, anything negative about herself," Roshan said. "If she was suffering she wouldn't open up with us; she would try to do it all by herself."

And Lucky was fighting a bureaucratic battle.

"VA comp has denied me, saying, 'You didn't get this while you were [in Iraq].' Social Security has denied me," Lucky said in the 2008 Southeast Missourian article. "How can you go to work with lesions, always tired?" That was the month before Lucky was first sent to Walter Reed for treatment.

Glenn Costie, CEO of the VA Medical Center in Poplar Bluff, said Lucky was granted 40 percent disability in October 2006, which meant she received a VA benefits' check of about $540 a month, with a bit more money for her dependent, Ceylon. Percentages are based on a complex medical assessment system rating the severity of various disabilities. The higher the percentage, the greater the benefit. Costie said Lucky's disability compensation reached 100 percent in August 2008, amounting to nearly $2,700 per month. Cynthia said her daughter didn't receive full compensation until sometime in the middle of 2009. Others confirmed.

"At the VA, it was such a fight, such a hassle for her," said Amacker, who was engaged in a similarly long fight for VA disability compensation for injuries he said he suffered during the war.

"Patient has not received the paperwork to get paid," one VA medical progress note states. Lucky was "anxious" to receive the check and had "thought the VA would pay for this earlier." The VA referred her travel expenses to Walter Reed, and the paperwork shuffle apparently continued there for sometime. In late 2008, Lucky had 30 percent lung function, and VA health care professionals said that she would need oxygen for portable trips. The VA, on Dec. 30 of that year, responded that it could not supply oxygen because "she does not meet the standard that pulmonary services" requires for oxygen.

On Dec. 23, health care providers said Lucky was "living with lupus," and that she "also has other illnesses related to service in Iraq."

"She cannot complete a shower without becoming very short of breath," the report states.

Lucky was dipping into Ceylon's college savings to make ends meet. Amacker said it destroyed her knowing she had to pull from her daughter's college fund to make it. It wasn't enough.

Lucky Sands with her daughter Ceylon

Her ex-husband, Steve Sands, said he helped oversee her finances during her long illness. At one point, Lucky had racked up some $30,000 in credit card debt to pay her bills. A check of Cape Girardeau County records shows a few financial services firms as claimants to Lucky's estate. While most of her treatment and care in the VA system and at the hospital at Walter Reed were covered, Sands said his ex-wife put her long stays at the Mologne House on credit. And the soldier who was injured fighting a war for her adopted country spent thousands of dollars for medicine and supplemental health care while she worked through the extensive VA disability compensation process.

"The Army ruined her," Sands said.

She was living on food stamps for a while, a fact that broke her parents' heart.

"My husband cried," Cynthia said. "That was very hurtful for us. We did not send our child to live on food stamps."

Lucky kept her troubles mostly to herself. Her family and most of her friends wouldn't know of her financial problems until long after. She shared many of her concerns with the VA as her health continued to decline.

"Patient is concerned about her personal safety and her young daughter if she is driving and her vision collapses," a medical report, dated Nov. 14, 2008, states. At this time, Lucky was suffering from blurred vision. The report went on to note that the "patient is paying her expenses to Walter Reed since her company cannot pay."

Amacker said when times got really tough he and Lucky would stock their cupboards with the help of the food bank.

"I put my life on the line, I was willing to die," he said. "Then you come back home and you feel like you're on welfare, fighting for welfare. It makes it worse than it should be on a soldier."

All the while, Lucky was driving from appointment to appointment. The medical bills were piling up and, more frustrating, she was sick and getting sicker by the days. Her friends say she still had hope that the military she loved would come up with an answer.

Amacker won his coverage battle with the VA. He said VA physicians now believe that he may have been exposed to chemicals during the war. Amacker suffers some of the some symptoms that Lucky did.

The Army did eventually grant Lucky a medical discharge, opening the door to VA disability compensation. By the time much of the paperwork was straightened out, Lucky was preparing to die.

"I think Lucky was thinking the military was going to take care of her. By the time they did, it was too late," Amacker said.

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2006

El Salvador was supposed to be easy, at least easier than Iraq. It was a humanitarian mission. Sure, there was hard work to be done. But you go in for a couple of weeks, build a school, a medical clinic, and you head back stateside.

Lucky left early.

She and others in her Reserve unit suddenly became seriously ill. At least two people died, Cynthia was told. Lucky returned home for medical treatment.

Dr. Amy Joseph, the St. Louis VA physician, said Lucky developed diarrhea and jaundice, according to a review of her medical charts. A Southeast Missouri Hospital emergency room note dated May 6, 2006, reports Lucky suffered from fever and chills, and complained of a headache. Doctors at first thought the soldier had contracted viral hepatitis. That didn't turn out to be the case.

Paul Mingus, who served on a different mission in El Salvador that year, said Lucky drank the water from a big tanker known as a water buffalo, at the base camp. The water was supposed to have been deemed potable, but many of the soldiers stayed away from it, opting to drink bottled water. Lucky told Mingus she thought the water might have caused the illness.

A lot of people were getting sick from all kinds of things, Mingus said, simply because they weren't accustomed to the subtropic environment. On the list of irritations and serious health threats were spider, ant and snake bites, he said.

Allen Evans, staff sergeant with the 955th Engineer Company, was in El Salvador, too. He remembers a soldier who died after being bitten by a spider. He served with Lucky in the Army Reserve. Lucky's unit relieved Evans' and crew in the construction campaign. He remembers Lucky came back sick and said it wasn't long after that her hair began to fall out and the lesions began appearing.

After El Salvador, Mingus said, he too noticed Lucky's health began to deteriorate. He believes whatever caused her illness there, exacerbated her overall health problems.

"I think it was a combination of being exposed to those mortars in Iraq. There was something seriously wrong with her after the mortar attacks, and maybe it diminished her immune system," he said. "Before she went to El Salvador she was healthy enough to be enlisted, but she wasn't in perfect health."

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The end

Paul Mingus was behind the wheel, speeding into the fist of another punishing snowstorm gripping the Midwest and mid-Atlantic. Lucky struggled for breath in the back seat, bound by that big oxygen tank. Her frightened father, in the passenger seat, kept his eyes on the snow-covered roads, his mind on a prayer.

Lucky was going back to Walter Reed.

She didn't want to. She wanted to stay home. She wanted to die at home, her family thought.

Lal was frantic. When Lucky left Walter Reed in November, she said she was done. She had lost faith in the military medical establishment. But she had no money to go anywhere else, and she refused to burden her aging parents' finances, much of their retirement already spent on airline tickets and hotel rooms to be with their daughter.

Lal begged and pleaded. My daughter needs help, he insisted, to anyone who would listen. One day he walked into Southeast Health Center waving printed pages filled with information on lupus he had found online. He asked the nurses, tell me what's wrong with my daughter. Give me books on lupus, or whatever it is that is killing my daughter. Please tell me. I know my daughter is not a patient here but please tell me. Lal rattled off the long list of medicines Lucky was taking.

"They must have thought my husband had gone off his head," Cynthia said. The calm, controlled man, the honored engineer, was reduced to begging, Cynthia said.

In November and December, Lal and Cynthia watched their daughter waste away. One soldier said there was no life left in her eyes.

Larry Smith visited her at her home. It was hard.

"Whenever I saw her, she was on that breathing machine," said Smith, Lucky's former mess sergeant. "I made her a cross and set it on her bed, and I talked to her. She couldn't hardly breathe. She'd say, 'I'm getting tired.' I'd say, 'You go ahead and rest.' I did quite a bit of the talking. I didn't ask her much questions."

Her appetite was gone. She ate little. Even her mother's caramel pudding lost its appeal.

Lucky relented, finally agreeing to return to Walter Reed in January.

They made West Virginia that first night. The next day Mingus was back behind the wheel driving Lucky and her father straight to the Mologne House. Lal had to call an ambulance not long after they arrived. His daughter was in severe distress. Mingus said they waited a long time for the ambulance. By the time paramedics arrived, Lucky refused to go. Mingus said Lal had to lure his daughter downstairs.

That weekend, after his friend was checked back into Walter Reed, Mingus drove back to Southeast Missouri. He would never see her alive again.

Again, Lal begged with the doctors and nurses to help his daughter. He felt they were doing little. Mingus would check in for updates. The news wasn't good. The desperation was growing.

"I would try to give him as good as guidance as I could," Mingus recalled. "Here's a father of a U.S. citizen, but he's from a different country trying to navigate through the DOD [Department of Defense] to get the care his daughter needed. There were cultural and language barriers."

Lucky didn't stay long. Armed at this point with VA health care coverage, she transferred to the Washington, D.C., VA Medical Center on Jan. 9. By then, it was too late.

"The doctors there said they should have brought her earlier," Cynthia said. "They tried their best, the team of doctors."

Lucky underwent another round of tests. It was clear her lungs were damaged beyond repair. The medical staff believed Lucky did have lupus. For her family, the disease was first confirmed when it was written on her death certificate.

The cause of death, according to a copy of the autopsy report obtained by the Southeast Missourian, was respiratory failure. Underlying the cause were interstitial lung disease, pneumomediastinum, or air in the chest cavity, and systemic lupus erythematosus, the autopsy states.

The provisional pathological diagnoses include lung disease, pulmonary hemorrhage and pneumomediastinum.

"The patient received two units of blood on January 18th after which she had severe worsening of her respiratory symptoms with tachycardia," the autopsy states. By this time, it seemed everything inside Lucky was conspiring against her.

She did have many of the symptoms associated with lupus -- fatigue, fever, weight loss, skin lesions, chest pain, shortness of breath, depression, memory loss. But some of those symptoms were also associated with post-traumatic stress disorder, cancer and the long list of other health complications Lucky was thought to be suffering from over that five-year period.

No two cases of lupus are exactly alike, according to the Mayo Clinic. Signs and symptoms may come on suddenly or develop slowly, may be mild or severe, and may be temporary or permanent.

"Most people with lupus have mild disease characterized by episodes -- called flares -- when signs and symptoms get worse for a while, then improve or disappear completely for a time," the Mayo Clinic website states.

For people suffering from severe lupus, however, complications can be fatal. Thousands of people die each year from lupus complications, and one third of lupus-related deaths occur among individuals younger than 45, according to the Washington, D.C.-based Lupus Foundation of America.

"Broadly speaking, lupus is notoriously difficult to diagnose. There is no single test to diagnose it," said Lupus Foundation spokeswoman Maggie Maloney. "The average person sees about four or five doctors, and it can take four or five years."

The VA's Dr. Amy Joseph said Lucky initially improved on the medicines, prednisone and other immunosuppressant drugs, that her breathing stabilized, and her skin condition cleared up. She said Lucky continued to suffer from joint pain, neuropathic nerve pain, which, she said, is extremely difficult to treat.

Cynthia, who was with her daughter for much of the period of her illness, said her daughter's condition never really stabilized.

"We saw her deteriorate every day. Since I came in May 2007 that is what we saw," she said.

People of African, Asian or American Indian descent are three times more likely to suffer from the autoimmune disease, and lupus affects women at a significantly higher rate than men, a rate of nine out of every 10 cases. Generally speaking, however, "Early diagnosis and improved management of lupus enable most people with the disease to live a normal life span," according to the Lupus Foundation of America.

And there is the rub, for Lucky's mother. She's not convinced of the diagnosis, but if Lucky did have lupus, Cynthia doesn't know why VA and Walter Reed doctors didn't make a clear determination years before, when there was still time.

"I believe strongly that in 2007, if they had started to treat her with the right treatment, she would not have died," Cynthia said.

"I believe they are saying these things to cover it up," she said. "They either wanted to safeguard their skins or they did not want to accept that they lacked the knowledge to treat her, or they were lazy."

mkittle@semissourian.com

388-3627